This is important to me, and it’s excellent advice for health-and-social-care workers in the UK. It is also (am I giving a trigger warning?) harrowing reading, if you have a little imagination and read it thoughtfully.
I periodically fill these forms in for my own beautiful, beloved children–40-odd pages, covered in questions which instruct me, in various ways: “Tell us, as explicitly as possible, how broken and helpless and developmentally stunted your children are. Give us as many grim details as you can, think of everything you and your children just endure bravely, all the things you just accept and try not to dwell on, in your everyday lives… Now describe that all in excruciating, minute detail, and remember to be honest about the emotional strain caused to both you, and your children.”
The respite is never more than a year or two, before they’re asking me to claim again, answer questions by phone, clarify something. I suffer from anxiety and depression anyway; spending hours fixated on the reality of all the struggles my children face… well. It usually takes me a week or more to complete the forms, and at the end of it, I feel as if the government would prefer me to kill myself and my children too, rather than give us money to live on. That’s not hyperbole or the disordered thinking of a depressed mental state: in a rational frame of mind, regularly taking my antidepressants, after a good night’s sleep and some tea and toast, I genuinely believe most high-ranking officials in this government would prefer our deaths–even by murder/suicide–to our continued survival, as long as the blame didn’t fall on them.
I remember the last telephone conversation I had with the DWP. I was asked if my autistic, non-verbal, self-harming, incontinent overnight (both bowel and bladder) 11-year-old could just change her own nappy, and why did I have to be awake in the middle of the night to help her?
When I described her efforts to clean herself, the things she understands (she needs to be clean, she doesn’t want to smell) and the things she doesn’t understand no matter how many times I show her, walk her through it, remind her (how to clean herself properly, how to make sure the poop is disposed of hygienically) when I spoke of how she sometimes grows frustrated and hits herself during self-care tasks, and how the last time I let her clean herself for a few days, to help her learn, to try to give her a little privacy and independence, she got thrush (a yeast infection, we’d call it back home) from repeatedly, clumsily, uncomprehendingly cleaning poop into her vagina, I broke down sobbing.
I cannot imagine how much worse it would be, were I claiming for myself; like most mothers, I’m willing to suffer intrusive questions and beg for mercy and cajole and plead for my children, in a way that I wouldn’t be able to find the energy for, if it were just to help me. I am unsurprised that, in the face of the increasing harassment of disabled people in this country, suicide rates in the disabled population are rising (and have been, since this party took over the government). Anyway. I digress, or at the very least, I’m growing long-winded.
Perhaps I should have just shared the following link without any introduction; I could write another 750 words on this, and still have more to say, so what was even the point of sharing this much; but it seemed important to tell you, and especially my new readers, why I care so much.
The article I’m linking you to isn’t about some hypothetical, pitiable, but ultimately distant human beings I’ll never have to look at. It’s my own sweet babies, their futures, what would happen to them if something happened to me, it’s about the system that would swallow them up and maybe, maybe look after them–and maybe leave them to their own devices, scared and unsafe and unable to properly clean themselves, each of them a constant fire risk, a risk to themselves when their ungovernable, autistic meltdown rages send them into a fury of self-harm, of dashing their heads against walls, of my little boy trying to hurl himself down the stairs, because (as an actual example) there was an unskippable ad (commercial) that interrupted his favourite YouTube channel.
It is so hard to keep them safe, clean, fed, even when I am with them 24 hours a day. It is natural that I live in a state of recurrent terror of what would happen to them, if I were no longer here; how could they navigate the welfare system, themselves?